Rational Patient Apathy.

Seton Hall law review Pub Date : 2019-01-01
Barbara A Noah, René Reich-Graefe
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Abstract

Patients with serious or life-threatening illness are frequently asked to make complex, high-stakes medical decisions. The impact of anxiety, low health literacy, asymmetric information and inadequate communication between patients and health care providers, family pressures, rational apathy by health care providers, cognitive biases of both patients and health care providers, and other factors make it quite difficult for patients in these circumstances to process and comprehend the strategic uncertainty and resultant risks and benefits of, and alternatives to, whatever therapeutic or life-prolonging treatment physicians are offering. All of these factors render the classic goal of "informed consent" unachievable in all but the rarest of circumstances: The effort to discuss and evaluate strategic uncertainty, its rational reduction into risks and benefits, and alternatives of treatment for purposes of optimizing decisional outcomes will have genuine intrinsic value only for ultra-rational patients (and physicians). In addition to these alterable barriers to rational decision-making--i.e., barriers that can, in theory, be overcome by ultra-rational patients and physicians with sufficient time and persistent inquiry--there is a second decision-making realm in which the added complexities of bounded rationality, clinical uncertainty and, in particular, of overall Knightian uncertainty provide insurmountable, unalterable barriers to confident rational decision-making. Within this more fundamental human realm of irreducible uncertainty, even ultra-rational, good-Bayesian decision-makers can never confidently calculate a highest-utility treatment option. In order to better describe this secondary realm of unalterable barriers to rational patient choice, including its usually subversive effect on end-of-life decisional behavior, by both average, minimally-rational patients and ultrarational patients, we coin the terms "rational patient apathy" and, relatedly, "rational patient ignorance." Given that confronting the absolute uncertainty inherent in facing one's mortality is cognitively, psychologically and emotionally daunting, and thus largely left unexplored and unpracticed by most patients for most of their healthier decisional lives, rational patient apathy at the sudden onset of a serious or life-threatening illness overwhelmingly defaults to negative decision-making: an affirmative choice to not make any balanced decision on the merits but rather to remain rationally ignorant of some or all aspects of the choice situation. In the context of this persistent patient avoidance of substantive decision-making, empirical evidence demonstrates frequent reversion to a quantity-over-quality approach, allowing health care providers to "do everything" until continued medical intervention reaches the point of obvious medical or economic futility. As a result—and as a largely discounted trade-off of choosing to avoid decisional burdens through non-careful consideration or no consideration at all—the overwhelming result of rational patient apathy in end-of-life decision-making is an irrational calculation and decision unto itself. Not only does rational patient apathy negate the classic (and utopian) goal of informed consent, it also exerts tremendous costs--on patients, on loved ones, on health care providers and on society at-large--in terms of adverse effects, avoidable suffering, constantly recurring decisional commitment costs, and the wasting of scarce economic resources.

理性的病人冷漠。
患有严重或危及生命的疾病的患者经常被要求做出复杂的、高风险的医疗决定。焦虑、卫生知识水平低、信息不对称和患者与卫生保健提供者之间沟通不足、家庭压力、卫生保健提供者的理性冷漠、患者和卫生保健提供者的认知偏见以及其他因素的影响,使患者在这种情况下很难处理和理解战略上的不确定性以及由此产生的风险和利益,以及替代办法,医生提供的任何治疗或延长生命的治疗。所有这些因素使得“知情同意”的经典目标除了在最罕见的情况下都无法实现:讨论和评估战略不确定性的努力,其对风险和收益的合理减少,以及为优化决策结果而选择的治疗方案,只有对极端理性的患者(和医生)才具有真正的内在价值。除了这些阻碍理性决策的可变障碍之外——例如:从理论上讲,这些障碍是可以被超理性的患者和医生克服的,只要有足够的时间和坚持不懈的调查。在第二个决策领域,有限理性、临床不确定性,尤其是整体奈特不确定性的复杂性,为自信的理性决策提供了不可逾越、不可改变的障碍。在这种不可约的不确定性的更基本的人类领域中,即使是极端理性的、良好的贝叶斯决策制定者也永远无法自信地计算出最高效用的治疗方案。为了更好地描述这种不可改变的障碍对理性患者选择的次要领域,包括它通常对生命终结决定行为的颠覆性影响,无论是普通的,最低限度的理性患者还是超理性患者,我们创造了术语“理性患者冷漠”和相关的“理性患者无知”。考虑到面对死亡所固有的绝对不确定性在认知上、心理上和情感上都是令人生畏的,因此大多数患者在大多数健康的决策生活中都没有探索和实践过,在严重或危及生命的疾病突然发作时,理性的患者冷漠绝大多数默认为消极的决策。一种肯定的选择,即不根据是非做出任何平衡的决定,而是对选择情况的某些或所有方面保持理性的无知。在这种患者持续回避实质性决策的背景下,经验证据表明,经常回归到数量多于质量的方法,允许卫生保健提供者“做一切”,直到持续的医疗干预达到明显的医疗或经济无效的点。因此,作为通过不仔细考虑或根本不考虑而选择避免决策负担的一种很大程度上打折的权衡,患者在临终决策中理性冷漠的压倒性结果本身就是一种非理性的计算和决定。理性的患者冷漠不仅否定了知情同意的经典(也是乌托邦式的)目标,而且还在不利影响、可避免的痛苦、不断重复的决策承诺成本以及稀缺经济资源的浪费方面,给患者、亲人、医疗服务提供者和整个社会带来了巨大的成本。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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